Mitochondrial Disease Interview with Melissa Hoyt

This is Mitochondrial Disease awareness week. As such, I’ve interviewed my close friend and fellow volunteer, Melissa Hoyt. Melissa has lived with Mito since childhood and has a unique perspective to share with us.

We all have mitochondria. They exist in nearly every cell in the body and are responsible for creating 90% of the energy we need to survive and support our organs. If mitochondria cannot make food and oxygen into energy, cell injury and death can happen. When this continues throughout the body, organs begin failing and even halt their functioning.

Rachael: What is living with Mito like for you?
Melissa: Living with Mitochondrial disease is living with something no one can really prepare you for.  It is an ongoing challenge that always finds a way to throw a new curve ball. That could be a new symptom or a new or worsening issue, one can never really be sure what's around the corner and that's not a great feeling.  This said, while it is not easy to live with Mito I have found myself trying to not let it rule me, and have still found happiness and maybe even a different level of gratitude then I would have otherwise. I have learned to really appreciate the little things. It has been important to learn to live with and in spite of Mito as there is still joy to be had and good that can be done. 

Rachael: What are some unique challenges you feel you face due to your illness?
Melissa: As far as unique challenges go a couple that come to mind include the unpredictable nature of this disease. It makes it so one day to the next it's not a certainty how I will feel. Having such uncertainty can be so frustrating.   I also think a challenge is the lack of knowledge and understanding about Mito while awareness has grown since when I was diagnosed, the medical world and society at large would do better if more was known and understood. In turn, this would help those of us living, struggling and or caregiving for those with this disease.

Rachael: How do you find balance between living with Mito and daily responsibilities and activities? 
Melissa: Finding balance is an ever-evolving area. Just when I think I’m there perhaps I find I need to adjust. I like to think Mito doesn't define me, it's a part of me but it's not all of me. That said, though it does have a say and does impact how I can or can't do things. I've learned to let myself rest when I need to and realize I need to pay attention to signals the body may be sending. For example, if my breathing is off on a given day, well then though my mind may say I need to get laundry done or I want to get out and take a walk and take advantage of a nice day, well that's not the time physically to go up and down the stairs or venture out. I have to try to be ok with that and know It will get done maybe just not that moment.  There is a constant juggle of want to and need to do and respecting and understanding where energy and body is at.

Rachael: What is one thing you would like people without Mito to know about your disease?
Melissa: One thing I would like people without Mito to know is while it is true Mito is a complex real condition that deserves and needs the same attention and push for a cure as other diseases.  There is no cure but make no mistake there is plenty of hope within our community!